The Hardest Part Can Be Starting: Parkinson’s and That First Step
You know you need to get up.
You want to get up.
You are perfectly capable of getting up.
But for some reason, you are still sitting there.
Or perhaps you’re standing at the bottom of the stairs.
You know where you’re going.
Yet beginning feels disproportionately difficult.
Maybe the washing needs putting away, you need to get dressed, make lunch, go outside or start getting ready for an appointment.
Once you’re doing it, you may be fine.
It is that first movement — that transition from not doing to doing — that can sometimes feel like the biggest hurdle.
For people living with Parkinson’s, this can be a very real part of everyday life.
And from the outside, it can be easily misunderstood.
“Come On, Let’s Go”
Imagine you’re going out together.
Everyone is ready.
Coats are on.
The car is outside.
Someone with Parkinson’s is still sitting in their chair.
So somebody says:
“Come on, we need to go.”
A minute passes.
“Are you coming?”
Another minute.
“We’re going to be late.”
From the outside, it can look as though the person doesn’t want to move.
Perhaps they’re being stubborn.
Perhaps they aren’t interested.
Perhaps they can’t be bothered.
But none of those explanations may be true.
They may want to go every bit as much as everyone else.
The difficult part may simply be getting started.
Movement Isn’t Always as Automatic as It Used to Be
Parkinson’s affects areas of the brain involved in controlling movement.
One of its characteristic motor features is bradykinesia, which means slowness of movement.
But bradykinesia isn’t simply about somebody moving at a slower speed.
People can also experience difficulty initiating movement and producing movements with their previous speed or amplitude.
That can make the beginning of an action particularly noticeable.
Standing from a chair.
Taking the first step.
Beginning to turn.
Reaching for something.
Starting to write.
Getting dressed.
Once the movement has begun, the experience can sometimes be different.
That is why someone may appear to struggle with the beginning of an activity and then continue with much less obvious difficulty.
Think About a Car on a Cold Morning
It isn’t a perfect comparison, but imagine an older car on a cold morning.
The difficult part is getting the engine started.
Once it is running, the car may travel perfectly well.
Parkinson’s can sometimes create a similar feeling.
The person isn’t necessarily incapable of the activity.
The system just doesn’t seem to move from stop to go as effortlessly as it once did.
That distinction matters.
Because if we only see the hesitation at the beginning, we can make the wrong assumption about what somebody is capable of doing.
Starting a Movement and Freezing Are Not Exactly the Same Thing
Some people with Parkinson’s also experience freezing of gait.
This can create the feeling that the feet are temporarily stuck to the floor even though the person intends to walk.
Freezing can occur when starting to walk, but it may also happen when turning, approaching a doorway, navigating a confined space or in other situations.
Not everybody with Parkinson’s experiences freezing, and difficulty initiating an activity should not automatically be assumed to be freezing of gait.
However, both experiences demonstrate something important:
Wanting to move and being able to initiate that movement immediately are not always the same thing.
It Isn’t Only About Walking
The idea of “getting started” can extend beyond the first physical step.
Everyday activities contain sequences.
Getting ready to leave the house might involve:
- standing up;
- finding shoes;
- putting them on;
- getting a coat;
- fastening it;
- finding keys;
- walking to the door;
- opening it;
- and getting into the car.
To somebody else, that’s simply:
“Get ready, we’re going out.”
But it is actually a series of separate actions and transitions.
Parkinson’s can make some of those transitions require more deliberate attention.
The result can be that an apparently simple task feels much larger from the inside than it looks from the outside.
There Can Be a Non-Movement Side Too
It is also important not to reduce every difficulty starting an activity to movement alone.
Parkinson’s can involve non-motor symptoms as well as motor symptoms.
Changes involving mood, apathy, fatigue, sleep and thinking can affect somebody’s ability or desire to initiate activities.
Apathy, for example, can occur in Parkinson’s and may involve reduced motivation or difficulty initiating goal-directed behaviour.
It isn’t the same thing as laziness.
Nor is it necessarily the same as depression, although the two can coexist.
That distinction is important because repeatedly telling somebody to “make an effort” may completely misunderstand what is happening.
If a significant change in motivation, mood or ability to begin everyday activities develops, it is worth discussing it with an appropriate healthcare professional or Parkinson’s specialist rather than simply assuming it is part of ageing or personality.
Fatigue Can Make the Starting Line Look Further Away
Then there is fatigue.
When you already feel exhausted, the effort required to begin something can seem enormous.
Consider the difference between thinking:
“I’ll go for a walk.”
and everything actually involved in making that happen.
Getting changed.
Finding the right shoes.
Getting out of the chair.
Putting on a coat.
Leaving the house.
If energy is limited, the preparation itself can become a barrier.
This is one reason why saying:
“You’ll feel better once you get out.”
may be perfectly well intentioned but not especially helpful.
The person may already know that.
Getting to the “out” part is the problem.
The First Step Can Become the Whole Task
Most of us mentally compress everyday activities.
We don’t think:
“I will now move forward in my chair, position my feet, lean forward, transfer my weight and stand.”
We think:
“I’ll get up.”
When movements are automatic, that shorthand works beautifully.
But if movement requires more conscious attention, the individual components become more noticeable.
The first step isn’t merely the beginning anymore.
It can become a task in its own right.
Small Prompts May Help — Pressure Usually Doesn’t
There is a difference between encouragement and pressure.
Repeatedly saying:
“Come on.”
“Hurry up.”
“Just get up.”
may increase stress without making the movement easier.
Depending on the individual and the particular difficulty, some people find that simple cues or breaking an activity into smaller stages can help.
Instead of:
“Get ready.”
it might begin with:
“Shall we put your shoes on?”
Instead of thinking about the whole walk:
“Let’s get to the front door.”
The objective hasn’t disappeared.
It has simply been reduced to a more manageable starting point.
Physiotherapists and occupational therapists can also suggest individual strategies where initiation, freezing or completing everyday activities has become difficult.
But Don’t Turn Every Movement Into an Instruction
There is another side to this.
Once family members discover that prompting can sometimes help, it is easy to become a full-time commentator.
“Move your foot.”
“Stand up straight.”
“Take another step.”
“Turn around.”
“Put your hand there.”
Imagine having somebody narrate your movements all day.
It could become exhausting very quickly.
What helps one person may irritate another.
And what helps in one situation may be unnecessary in another.
The simplest approach is often to ask:
“Is there anything you’d like me to do when you get stuck?”
Ask when things are calm, rather than trying to invent a strategy in the middle of a difficult moment.
Starting the Day Can Be Difficult Too
This experience can be particularly noticeable in the morning for some people.
Medication may not yet be working optimally.
Stiffness may be more noticeable after being in bed.
Sleep may have been poor.
Everything can seem to require an extra degree of effort.
Someone may therefore take a long time to move from waking up to actually beginning the day.
Again, this doesn’t necessarily mean they don’t want to get up.
Sometimes wanting to start and being ready to start arrive at different times.
Notice What Happens After They Begin
One of the most useful observations family members can make is what happens after an activity starts.
Does somebody resist the idea of going out but enjoy themselves once they’re there?
Do they struggle to begin getting dressed but manage once the first few steps are underway?
Is standing difficult, while walking becomes easier once they are moving?
Does starting a conversation take time, but participation improve once it develops?
Patterns like these can provide useful information.
They can also change the question from:
“Why won’t you do it?”
to:
“What would make getting started easier?”
Those are very different questions.
Don’t Confuse Hesitation With Refusal
This may be the biggest lesson.
When somebody doesn’t immediately begin something we’ve asked them to do, we naturally interpret the behaviour.
They don’t want to.
They aren’t listening.
They’re being difficult.
They’ve lost interest.
Sometimes one of those explanations will be correct.
People with Parkinson’s are still allowed to simply not want to do something.
But sometimes the pause between intention and action is exactly that:
a pause.
Give it a moment before deciding what it means.
Starting Is an Achievement Too
We tend to celebrate completion.
The walk completed.
The appointment attended.
The meal cooked.
The garden tended.
The trip made.
But when getting started itself requires effort, perhaps the beginning deserves more recognition.
Getting out of the chair.
Putting on the shoes.
Opening the front door.
Taking that first step.
These may look like tiny actions.
They can represent the moment somebody overcame the largest barrier.
So if someone living with Parkinson’s seems to take an unusually long time to get going, don’t automatically assume the problem is willingness.
Don’t immediately take over.
And don’t underestimate what may be happening before that first movement appears.
Sometimes the hardest part of the journey isn’t how far you have to go.
It’s getting from zero to one.
Hullbridge Parkinson’s Cafe provides a friendly, informal place for people living with Parkinson’s, their partners, families and carers.
We meet at Hullbridge Free Church, 47–48 Lower Road, Hullbridge, Essex SS5 6DF, on the first and third Tuesday of every month from 11:00am–1:00pm.
No booking is required and new faces are always welcome.
If you or someone you support is experiencing new or worsening difficulties with movement initiation, freezing, motivation, mood or everyday activities, speak with an appropriate healthcare professional or Parkinson’s specialist. A physiotherapist or occupational therapist may also be able to recommend strategies tailored to the individual.